Based on the IPSS scores, there is a survival rate that goes along with it. Mu question is: Does the survival rate apply if no treatment is given and it is left on its own? After reading many posts here, with the treatments available, I feel these survival rates are not up to date. Any opinions on this? Thanks.
P.S. - My IPSS score is 0.5 which shows a survival rate of 3.5 years.

Neil Cuadra

Fri Dec 5, 2008, 12:24 PM

Where did you read the survival rates?

Birgitta-A

Fri Dec 5, 2008, 03:19 PM

Hi George,
As far as I understand both IPSS and WPSS give figures in patient materials up to 2004 or earlier. That means that only patients in trials were treated for example with Vidaza/Dacogen or Revlimid. Few patients got drugs for iron over load and drugs like Neupogen. When I looked at the WPSS median survival for me the median increased from 19 months to 31 months in a more up to date article.

Then there are several groups that have their own prognostic variables. When they look at for example performance status and comorbidity (other diseases) I get a better median survival becuse I feel OK.
Kind regards
Birgitta-A
69 yo, transfusion dependent, Desferal for iron over load, Neupogen for low white blood cells, asymptomatic

gbrilla

Sat Dec 6, 2008, 10:21 AM

I've seen these IPSS charts on several MDS web sites. If you google 'ipss mds' you will get hits on different web sites that show this chart. This is where I got my score of 0.5 and was told by my doctor I was Intermmediate-1 using this chart.

Neil Cuadra

Sat Dec 6, 2008, 02:57 PM

The IPSS charts that you see on a number of web pages (example (http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=cmed.table.32808)) were based on the data gathered by Greenberg et al. (http://www.ncbi.nlm.nih.gov/pubmed/9058730) for the development of the IPSS in 1997. That predated the drugs now used to treat MDS, so those survival statistics were for patients who received only supportive treatment.

Patients looking at IPSS charts or FAB charts (example from 2002 (http://www.clevelandclinicmeded.com/medicalpubs/diseasemanagement/hematology/myelo/table1.htm)) should keep a few facts in mind:
The older the statistics, the more pessimistic they will tend to be.
Mean survival improves every year as established treatments are refined and new treatments are developed.
"Mean survival" does not indicate how many years most patients in the study lived. It's an average; half the studied patients survived at most that long and half survived longer, and many survive much longer.
Statistics apply to a group of patients and not to one particular patient. Many other factors affect survival, including age, prior treatments and responses to treatment, and general health.